Screening for hemochromatosis and iron overload: satisfaction with results notification and understanding of mailed results in unaffected participants of the HEIRS study.
OBJECTIVE
The purpose of this study was to assess the level of satisfaction and understanding of test results, by a sample of non-C282Y homozygous participants in the hemochromatosis and iron overload screening (HEIRS) study, who received serum ferritin (SF), transferrin saturation (TS), and HFE gene test results by mail.


METHODS
Approximately 1 month after receiving test results by mail, participants were surveyed about understanding of and satisfaction with results notification.


RESULTS
Overall, participants were satisfied with receiving test results by mail. Participants receiving results with one or two HFE mutations or TS and/or SF levels outside the normal range (an "alert value") were less likely to be satisfied with this method of notification. Participants with normal HFE test results understood their results and recommendations better than those with one or two mutations. Although all participants received results letters in their native language, English-speaking participants had higher mean understanding scores than Mandarin, Vietnamese, or Spanish-speaking participants.


CONCLUSIONS
Participants were satisfied with receiving test results by mail. However, the level of understanding of the results was not sufficient for this mode of results notification to stand alone, especially for non-English speaking participants, and all participants with one or more test results outside the normal range.
Harrison
Helen F
HF
Department of Medicine, London Health Sciences Centre , London, Ontario, Canada. hharrison@fanshawec.ca
Harrison
Barbara W
BW
Walker
Ann P
AP
Lohman
Kurt
K
Ellis
Shellie D
SD
Hall
Mark A
MA
Reiss
Jacob
J
Adams
Paul C
PC
Holup
Joan
J
Acton
Ronald T
RT
Bent
Thomas
T
Rivers
Charles
C
Fadojutimi-Akinsiku
Margaret
M
D000328:Adult; D000368:Aged; D032882:Comprehension; D018563:Disease Notification; D005260:Female; D005293:Ferritins / Q000097:blood; D005820:Genetic Testing; D006432:Hemochromatosis / Q000097:blood / Q000175:diagnosis* / Q000235:genetics*; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I / Q000235:genetics; D006801:Humans; D019190:Iron Overload / Q000097:blood / Q000175:diagnosis* / Q000235:genetics*; D008297:Male; D008403:Mass Screening; D008565:Membrane Proteins / Q000235:genetics; D008875:Middle Aged; D009154:Mutation; D017060:Patient Satisfaction; D011177:Postal Service; D011795:Surveys and Questionnaires; D014168:Transferrin / Q000378:metabolism
C103673:HFE protein, human; D000071020:Hemochromatosis Protein; D015395:Histocompatibility Antigens Class I; D008565:Membrane Proteins; D014168:Transferrin; D005293:Ferritins